Anyone out there living with stage 4 lung cancer?

Hello @wodlinger, thank you for sharing your story and your outlook on what is yet to come. It's often hard for others to meet us in the place that you describe. I would call it acceptance for what is yet to come. It's nice that you have a way to put it into words that likely eases the minds of others. Many of us are stage IV, but living longer lives than initially expected.
I also appreciate you visualization of your treatment or therapies eating the cancer cells. That one may be helpful for me sometimes too! I take a targeted therapy (pills specific to my type of cancer), but also try to eat well, do some yoga and meditation. I've been fortunate, diagnosed 5 years ago as stage IV and picked up a second cancer (breast) in the past year, so I'm wondering when my luck with the lung cancer treatment will run out. I'm just starting to explore and investigate some more functional medicine types of treatments.
Are others in your life on board with your plan for palliative treatments?

Yes, I also have stage 4 lung cancer. I am about to engage a series of radiation therapy, the palliative kind, to reduce the pain in my chest, mainly. I am not afraid of dying; to me this is a transfer of my essence, my spirit/soul, into the realm of eternal life with my Messiah. However, I do want to live on this earth as long as possible, so I will be fighting this disease as much as I can. I am engaging in visioning various elements attacking the cancer cells and eating them, one by one. I would be interested in knowing about other strategies for fighting this cancer.

Thanks for sharing your story. had no symptoms from my lung cancer. It was found accidentally with a CT scan for kidney stones. I have been on the Tagrisso for two weeks and so far so good. Since my breast cancer is triple negative and as of the sonogram not in my lymph nodes. I will probably opt for a mastectomy. I meet with doctors next Wednesday and figure out the plan andwill get the BRCA test.

Hi @marydel, My breast cancer is invasive lobular carcinoma, completely separate from the lung cancer which is an adenocarcinoma. Mine is strongly estrogen and progestogen positive (90+%), HER2 negative. I don't have the BRCA genes. I did have a single mastectomy in November '24, without reconstruction, and the removal of 5 lymph nodes. Considering the lung cancer diagnosis and my fierce independent streak, I wanted the simplest surgical option so I could get back to living my fairly active life. I understand that everyone has their own reasons for making the decisions that they do, it's a very personal choice. My post-surgical pathology showed a 3 cm tumor, with a low chance for recurrence, and two lymph nodes with micro-metastases. I started zoladex injections and one of the aromatase inhibitors (AI, exemestane) to remove the estrogen from my body. I'm fairly new with the AI, and I continue to work through some of the side effects. Hoping that some of those calm down soon.
I'm glad your lung onc and breast surgeon are communicating and developing a plan. It's important to have input from both sides. I'll be interested to see what they think. Were you noticing any side effects from the lung? If yes, has the Tagrisso helped? When do you have your next follow up appointment?

Thanks. I realize this is group is for lung cancer but since I have both like you can you share the treatment you had for your breast? Unfortunately mine is triple negative and not responsive to ER and as of few weeks ago had not spread to lymph nodes. The lung oncologist and breast surgeon met yesterday afternoon to discuss a plan of action.

Hi @marydel , Welcome to Mayo Connect. I'm sorry that you are having to face both cancers at the same time. I'm sure it's a lot to take in and process.
Each of our cancers are different, and the statistics are helpful, but they aren't YOU. There are certainly people that have long term success with only Tagrisso, longer than the median number of months shown in the studies.
Tagrisso alone was the original plan when the med was developed, but the FLAURA2 study looked at adding chemo to Tagrisso, with encouraging results. In just 2024 the FDA approved the combination of Tagrisso and chemo for advanced NSCLC. Because that was fairly recent there are fewer stories from people on the combination.
One of our valued members, Matthew @flusshund, has been taking Tagrisso for nearly five years. You can read some of his story here: https://connect.mayoclinic.org/comment/1303814/.

The second cancer certainly makes things complicated. I have stage 4 lung cancer and had surgery for 1B breast cancer late last year. The breast cancer treatment may help make your decision about the chemo. Do you have an oncologist that will help to coordinate the treatments for both cancers?

I hope it works well for you.

For breast cancer my doctor is meeting with the hospital “tumor board” on Tuesday since the breast impacted is on the same side as lung. Will know late next week.

My oncologist said there have been studies that Tagrisso plus chemo have better outcomes.

Tagrisso is usually a singular treatment for lung cancer. Chemo is given when there is some progression but Tagrisso is still working on most of the lesions.

How will they be treating the breast cancer?

I have recently been diagnosed with Stage 4 non small cell lung cancer with EGRF AND AXON 19. It’s stage 4 because it has spread just outside the right lung. I also have a lump in my breast which is separate. Yes 2 separate cancers. As I wait for a treatment decision on my breast.. I have just started Tagrisso. Chemo is also recommended for my lung.
My questions are: has anyone had long term success on Tagrisso without chemo? Or is the chemo necessary? I will probably have to decide by mid June
Thanks